Chronic fatigue syndrome, or ME, is a little-understood but potentially devastating illness which costs the UK around £3.5 billion annually in medical treatments.

Chronic fatigue syndrome, or ME, is a little-understood but potentially devastating illness which costs the UK around #3.5 billion annually in medical treatments.

Today is the start of ME Awareness Week and Kay Jordan has been finding out how it has affected the lives of two young sufferers

Cassandra Johnson should have been taking A-levels this summer. Instead, she sleeps 20 hours a day, has been housebound for the last two years and sees no one apart from family and doctors.

Cassandra, of Scotswood, Newcastle, who will be 18 in June, is very severely affected by ME. She has had it since she was 11 and had to leave school at the beginning of 1999 when she was just 13 because of it.

She isn't up to being interviewed but, through her mum, she wants to tell her story to highlight ME Awareness Week and the plight of young sufferers in particular.

Basically, I've had it all over the last 12 months. Luckily, my GP has been compassionate and supportive, firmly believing in the existence of ME.

"The duration of the illness has very much been a rollercoaster ride of emotions as I relapse or have good days.

"Only recently has the imbalance between good and bad days finally begun to equal. I still remain unable to attend school due to my inability to walk long distances and concentrate for long periods.

"Being housebound is incredibly suffocating, and the inability to go out, enjoy a social life and even carry on full-time education has added to my frustration.

"The spontaneity, freedom and independence that the average teenager takes for granted every day, as I did, was lost in an instant, leaving me very resentful of my circumstances and feeling completely ostracised from school friends, who take little interest in my illness. I'm out of sight and out of mind."

Thankfully for Rachael and Cassandra, they found out about the Association of Young People with ME (AYME), an organisation established by sufferers which provides lifelines by means of a website, and a bi-monthly publication, as well as other services.

"Suddenly I gained an understanding and informed, non-biased advice on the disease, finally gaining a fraction of the freedom I lost.

"Support has been the key to my ability to survive the isolation of the illness, as without the encouragement and inspiration received from family, friends and AYME, I don't know where I'd be. I owe my parents a great deal.

"Via AYME, I've met so many people, who've struggled and battled with ME, who otherwise I would have never known or felt so much compassion and thanks for. I genuinely thank them all and admire their resilience and continual positive outlook."

She hopes that one day soon they'll be able to enjoy life far more. As for herself, she says she'll never be the same person as she was before the diagnosis of ME.

"My appreciation for everything has grown and I've learnt many of life's lessons in a short period of time, lessons my peers lack. Though I may struggle, my determination hasn't dissipated.

"As for the future, there will be more setbacks along the road to recovery but my outlook is positive, I will recover."

AYME is using ME Awareness Week, to raise its profile and reach out to thousands of children and young people who, it says, are still suffering alone.

It says there are an estimated 25,000 children with ME in the UK. Children as young as five have been diagnosed with it and it can last for six months to six years - and more. It most commonly follows persistent viral infection.

As yet, there is no clinical diagnostic tool, although new research is looking promising. At the moment, diagnosis is through elimination of other conditions.

There is no cure for ME. People learn to manage the condition and their lives by balancing activity with rest and relaxation.

In severe cases, activity can mean simply being propped up in bed for 10 minutes or stroking a pet and sufferers can be tied to wheelchairs or beds for many years, unable to feed or dress themselves or cope with noise or light and suffering from pain, headaches and nausea.

AYME's aims are: to create opportunities for young people with ME to help, support and encourage each other; to supply information and advice to them and their families and friends; to empower them to have their voices heard; and to campaign and lobby for increased recognition and understanding of the needs of young people with ME.

The lack of knowledge and understanding about ME, which stands for myalgic encephalopathy (also known as chronic fatigue syndrome and post-viral fatigue syndrome) means that AYME's telephone and e-mail helplines are always busy and thousands of information packs are sent out each year.

Young sufferers tell of the loss of education, friendships and ambitions and these are just some of the casualties of the debilitating and isolating illness.

By sharing their experiences, young people can begin to overcome the devastating impact ME has on their lives.

AYME has won Department of Health and corporate funding for positive living workshops, designed and delivered by young people with ME.

"These workshops provide young people with a chance to get support and talk about the negative effects of ME and to build confidence," said AYME project worker Katie James.

At the end of the project, AYME will have trained a network of young people to deliver the confidence-building workshops and produce resources to support and inform young people about how to live with ME.

The charity also runs popular peer support services which put children and young people in touch with others in similar circumstances.

Members who are well enough are encouraged to run member services, and others can gain new skills and increase their confidence by writing articles for the bi-monthly magazine or managing fundraising events and raising awareness.

AYME is continuing its fundraising campaign to establish a network of outreach workers to give practical and emotional support to the most isolated children and young people with ME in the UK.

As well as coming to terms with the fact that they have a serious illness which forces them to give up their studies and ambitions, young people also have to fight other battles with disbelieving educational, medical and social care staff, it adds.

* The AYME helpline is (01908) 373 300 and it is open weekdays from 10am to 4pm. Its website is www.ayme.org.uk

ME North East runs groups for young people and adults. The organisation can be contacted at: Bullion Hall, South Approach, Chester-le-Street, Co Durham DH2 2DW or on (0191) 389 2222

Causes of ME varied

There are an estimated 150,000 ME sufferers in the UK.

Symptoms include profound exhaustion, muscle pain and cognitive problems such as memory loss and concentration.

Sufferers can also complain of sensitivity to light, noise and smell, disturbed sleep patterns and headaches.

Scientists believe possible causes of ME include viral infection and stress, although other secondary, psychological and even social factors could contribute.

There is no known cure for the illness, no clear cause, no test for diagnosis, no treatment regime that fits all and no way of knowing when, or whether, patients will recover.

Plans for much-needed research into chronic fatigue syndrome were welcomed by ME sufferers at the end of last year.

Guidelines were published by the Medical Research Council for studies into the debilitating illness

The publication, the latest step towards proper research into the disease, was seen as a sign that ME was being recognised as a physical illness rather than a psychological condition.